As I sit in the waiting room, waiting for Levi to come out of surgery, I can’t help but think about other surgeries. With my perspective now, it is still a big deal for a kid to have surgery, but it hasn’t consumed my thoughts like it used to. I can’t help but think of how far I’ve come.
Before August’s birth, the only surgeries my kids had had were tonsillectomies and ear tubes. Nothing major, even though they seemed big at the time. After August’s birth, I prayed hard that we would have a miracle and that he would be healed without surgery. That didn’t happen, and we found ourselves flying across the country for his first surgery when he was only 4 months old. I was a wreck. The trauma of August’s birth and the guilt I felt for it made it all hard to process. His first surgery was to repair his nerves, and it was investigative. The doctor didn’t know what he was going to find, and we just had to trust that he knew what he was doing, and that the surgery was necessary. It was going to be a long surgery, with August being under for up to 10 hours. I kept thinking ahead to the hours he would be in surgery and imagining how anxious I was going to feel. I was anxious about the casting and aftercare (this is usually the only part that still stresses me out). In the end, I felt peace the entire time August was in surgery. I have felt the same way with every surgery since. That is something that I count on now.
August’s second surgery was scheduled for the first week of May 2017. Greg entered the ICU on April 26, and I couldn’t imagine dealing with Greg’s condition at the same time as going to Philadelphia for surgery. I called the surgeon from the hospital room and told him we would need to reschedule. That was such a stressful time, and this surgery was stressful as well. August was going to be in a cast that would put his arm in a “statue of liberty” position. I worried and worried about this cast. This is when we learned about vEDS, and because of August’s birth history, we thought he probably had it. VEDS definitely adds to the stress of a surgery every time. It makes it riskier for several reasons.
When it was time to reschedule, Greg and I decided he shouldn’t go to Philadelphia with me for the second surgery. He kept having complications, and we just didn’t feel good about it. I rescheduled the surgery for July 25. My dad went with me, and all went well. August even learned to walk in that crazy cast! He never seemed phased by it. That’s the story of his life.
For reasons I can’t remember, Greg and I decided that I would go to August’s 3rd surgery without another adult. That was scary. Flying by myself with a kid was concerning, especially flying home after surgery. I am anxious about driving in new places, and the surgery was a couple weeks after the riots that were happening all over the country. Because of my anxiety, I made some incredible new friends who let August and me stay with them (twice). Philadelphia truly is the city of brotherly love.
In between August’s third and fourth surgeries was Levi’s emergency appendectomy. That was a scary night/day. It was frustrating to not feel that we were being taken seriously. Levi has vEDS, which means he could be having life threatening complications, but no one was in much of a hurry. Thankfully all was well. This surgery was scarier because it was in the abdomen where there is more vasculature. I was riskier. It’s hard to have thoughts of your baby’s possible death, and those are thoughts I have had to deal with quite regularly with the reality of vEDS.
August’s 4th surgery. Long story short, August and I flew to Philly, had pre-op, and went to bed. I got a call early in the morning saying he tested positive for COVID. The surgery was canceled, and I got a rental car and drove home. That is a post for another day.
Greg and I went back to Philly on December 1st to retry the surgery. It was some of our last time together. The last time I was sitting in a hospital waiting room for a surgery I was sitting with him. We actually had a heated conversation, but that’s beside the point. Greg passed away on December 10th, a week after we returned from Philadelphia. I have wondered if the change in altitude from the flight had anything to do with his death. That surgery is tied to Greg’s death in my mind. All of August’s postop care has happened without Greg. He wore the cast to the funeral. He still has it in his drawer because Greg signed it.
So many surgery stories, and one is being created right now. The kid with no ACLs. Hopefully the recovery is boring, and we don’t have any big stories to tell about this one.